By: Anne Grunstead
The Grunsteds went to Tampa, Florida for this year’s spring break. This is the first year Bobby was healthy enough and strong enough to go on an active vacation. We were all very excited.
We enjoyed the local attractions and Bobby amazed us with his confidence to try new things. He has worked so hard in Physical Therapy to be able to enjoy unsteady rides and let loose like a 6 year old needs to let loose.
He had fun exploring.
But there was one very special reason we chose Tampa for our trip. Busch Gardens has a Sesame Street attraction. And Bobby loves Sesame Street. He does not care about Santa Claus or the Easter Bunny, but the Sesame Street world is very dear to him. So we took him to meet his hero. It was amazing.
A friend, family member, and citizen. A young man who was taken from us too soon. A laugh that was infectious. A legacy of devotion and change.
Recent laws, results of the efforts of tireless advocates, that have changed the world as we know it for children and adults who have Down syndrome. (Thanks to Joe Meares for putting the timeline together)
For some, changes in laws and attitudes have resulted in increased inclusion and greater opportunities. Battles had to be waged, but the results were fabulous!
Despite progress in some areas, without major societal changes, those who have been included in K-12 education often face exclusion and limited opportunities as adults.
New prenatal testing procedures make it easier to detect Down syndrome before birth. Unless and until fair and balanced information is available with those tests, these statistics will continue and/or get worse. For adults who have Down syndrome, these statistics make the world less accepting of those who are already here.
Abuse and neglect have plagued our community and have been discovered in many settings that were supposed to support people with disabilities. Landmark court decisions were necessary to facilitate change. With those decisions comes fear and a race to eliminate the possibility of recurrence. Those of us with adult children have experienced the results of poor planning and inadequate resources for unfunded mandates in the name of progress. As the nation and the world look for solutions to current abuses in the 'sheltered workshop' environment, we hope everyone remembers that there are real lives being affected with every decision.
The link between Down syndrome and Alzheimer's disease is real and threatens the very health and memories of those we love.
The more things change...
Those of us on "The Road" have lived through a time of great change. We've advocated for our loved ones to the best of our ability. Now we've come together to face the challenges, questions, and JOY of adulthood. We remember the past, our own and those who came before us, and we move "forward with hope" toward a brighter future that comes with community.
Her daughter, Dev, is the inspiration behind the main character - "Sam" in:
Q is for Questions
When Dev was born with DS we had QUESTIONS. The diagnosis was a surprise. These were the BIG QUESTIONS: Would she live, would she be healthy, would she grow up? How will this change our family?
She was discharged from the hospital after a week in the NICU, healthy and ready to go! Her family stunned but ready to move forward.
When we looked for a preschool we had Questions: smaller Questions: Would they take her, would they see beyond her diagnosis and see the sweet child?
The preschool opened their arms and LOVED her, engaged and taught us all. Our family flourished.
When Dev went to primary school we had questions: smaller and simpler: Would she make friends, would she learn, would she be outcast?
She made friends, she learned she was not an outcast. (Dev is right behind the girl with the red bow in her hair and #4 on the basketball team)
Middle school questions: she had friends, she was learning.
At the time they were questions, but looking back we can see this was a very easy time!
Dev LOVES high school, she loves learning, cheerleading, hanging out with friends.... She loves to help in the kitchen, clean, be independent in self care, ride her bike.... but ... here is the question: What is all this schooling for?
We’d been busy working year to year, on classes, learning, friends, independence skills.... Now it is time to think more about the WHY we’ve doing all of this. The reason for school for any student is so you can get some day get a job. So you can move out, live on your own and pay your own bills... How could this get lost in the day to day inclusion, grade, sports world of school?
Life beyond high school, back to Bigger Questions:
Guardianship, Power of Attorney, Life Trusts, Living Arrangements, Employment, SSI, DDA....
We are in the thick of answering all of these Questions. When the Questions get bigger it is time to ask for help... just as we did when Dev was born. We are looking to Special Needs Attorneys rather than medical doctors this time. We are looking to other families that have gone through this part of the journey.
The amount of joy, understanding and inspiration our family and friends have gained from having Dev in our lives has never been in Question. Follow Dev on Facebook at RaiseExpectations, and at www.raiseExpectations.com
Please keep sharing on “The Road We’ve Shared” to help our community answer all of these day to day questions as well as the bigger social questions that lie all around us.
You never know what kind of game or fun you will have with Josh..lol.
One thing is for sure...He always wins!
We truly are a "blended family." Maria is the mother of Josh's two fabulous brothers, Jordon and Jared. (Featured in my "B is for Brothers" post on Walkersvillemom). The five of us lived together for a time when the boys were young. Maria got the crash course in Down syndrome! :D
Thanks Maria for sharing your perspective with us!
"Words can't describe how much love Josh has brought into our lives, or how much he has to give. I remember when Jordon and Jared were little, and how much Josh loved his brothers instantly."
Before I was a parent and in the beginning of parenthood, I had (in my mind) strict age rules about when a child was old enough to go into the movie theater. Then one day, in that brief time between setting a date for heart surgery and entering the hospital, I drove by a theater showing Disney’s Beauty and the Beast and said –
“F$%#- it. Let’s go to the movie.”
I took the little man, not quite two years old, into those big movie seats and bought licorice. He slobbered all over it, giggling the whole time, clearly licorice was the funniest thing he ever tasted! The movie captivated him. Once he learned to walk he performed the whole movie for us, jabbering every word and song in his own language.
Then came Lion King.
When I volunteered to cover the letter L for the A to Z challenge, I immediately thought this would be so easy. The letter L covers so many wonderful adjective verbs and nouns. Love, laughter, life and light are just a few of these happy words. But as I was going through the L words in my mind I found one that really describes some of the many emotions that I learned to feel as part of our life with Down syndrome. Ludicrous
lu·di·crous /ˈludɪkrəs/ Spelled [loo-di-kruhs]
Adjective - causing laughter because of absurdity; provoking or deserving derision; ridiculous; laughable: a ludicrous lack of efficiency.
Who would have thought that the addition of a very tiny chromosome could create fundamental changes in a person’s cellular make-up and be responsible for Down syndrome. Ludicrous
Who would have guessed that having a child with a disability could be one of the greatest gifts a family could receive. Ludicrous
Who can count how many times has my daughter Alex had found something so funny in the mundane that I have cried from laughing so hard. Ludicrous
And finally, the most ludicrous of all….the naysayers, the doubters, the disbelievers, and the systems who all say our kids with Down syndrome can not succeed, can not live fulfilling lives and are less than their peers. Ludicrous.
I didn’t know before he was born. I didn’t know in the hospital. I didn’t know the first few days as I was bonding with my baby. That was a blessing. I was a little bit afraid for his health because he had jaundice and had been under “the lights” in the hospital. As a new, first time, young mother, I watched him like a hawk – keeping a hand on him even as he slept so I could feel his breathing.
But I didn’t know the laundry list of possible health problems that would be presented to me in a few weeks. I didn’t know the meaning of the words Down syndrome. Heck, I don’t think I even really knew what a chromosome was. I didn’t know what it felt like to really worry about my son’s future.
When I heard the words for the first time, I allowed myself to cry. Once. On the way home from the geneticist’s office.
Then I went about the task of learning.
They can’t tell you how to love your child – and that’s what really matters most.
The Road that is parenthood is a lifetime of learning, growing, and caring. There are pot holes of fear, pain, and struggle to be sure, but those are just momentary bumps. I’d tell myself not to get too caught up in the destination or how long it will take to get there.
Jovial – joyful and playful.
Jaunty – fashionable; stylish
Jocund – cheerful; high spirits.
Jazzy – lively and bright
Jocose – humorous; joking
But most of all - he's the light of my life!!